Autism Parents Say They’ve Been Duped In Open Letter To Coteau

(Autism Parents Say MCYS is still cutting therapy from kids 5 and up)

In an open letter to the Ontario Minister of Children and Youth Services, several parents of autistic kids say they’ve been duped by the province into thinking that funding was restored for intensive therapy for kids over 5.

Last year Ontario Premiere Kathleen Wynne decided to cut funding for intensive behavioral intervention therapy for kids over the age of 5, which sparked heated protests from parents, and support for parents concerns from both opposition parties, experts and the public. After months of tremendous public pressure, the Wynne Government “backtracked” and “restored” funding stated that all kids would get the therapy they need regardless of age. Parents are now refuting that, and almost a year later, evidence is starting to emerge that only a some kids have received funding from the government with many over the age of 5 still being denied.

What’s also in question is the transparency around a committee set up by the Wynne government to look at implementation of the Government’s new autism program set to start in June of this year, leaving many questions parents have with respect to this new program and what is currently taking place with therapy for kids over 5 unanswered.

A full copy of the open letter can be found here, and displayed below:

Hello Mr. Coteau,

Surely you are aware that the autism (ASD) community has been closely following the progress the Ministry of Children and Youth Services (MCYS) has made in regards to the implementation of the new Ontario Autism Program (OAP), since you, Mr. Coteau, were named the Minister of Children and Youth Services this past June.

Your initial commitment to improving the roll out of the new OAP and including the ASD community in the process, feels like nothing more than an exaggerated attempt at manipulating parents into believing we have a reason to celebrate, a reason to be hopeful. Many children are simply being forgotten, the public is still left without crucial information, non-disclosure agreements remain in effect on both the Advisory and Expert Committees, and many families are feeling as though their child’s services are about to be taken away. We are not hopeful, we are terrified.

In June of 2016, you had committed to removing the 5 year age cap and ensuring that all children with autism, regardless of age, receive the clinically recommended, individualized services that they need, including those currently receiving services and those removed from the Intensive Behavioral Intervention (IBI) wait list. You did not announce this as a short-term offering, but a long-term solution. As we approach spring of 2017 and are just a few months away from the anticipated start of the new Ontario Autism Program, things clearly aren’t going as planned.

Some things have remained consistent, in contradiction with your commitments. Regional providers are still suggesting and moving forward with plans to reduce services for those over 5; many families were delayed in receiving or simply not told that they qualify for the one-time funding payments, others face great difficulty reconciling funds though spent appropriately; wait lists continue to grow as services are not being offered to families any faster than before;Children 3-5 years old receiving new diagnoses’ are not only continuing to age out of IBI eligibility, they do not qualify for any interim funding or continuous ABA; and parents continue to be left in the dark about how the new OAP will affect their children’s lives.

Though you assured parents that all children would receive individualized therapy at the level of intensity that they need, every contract, letter, and even the Ministry web page make it very clear – when the new OAP begins in June, as spots become available, children 5 and older can not continue their DSO/DFO IBI, those removed from the wait list can not continue their currently funded private therapy or continuous ABA treatment from their regional provider. The age cap for intensive therapy? It will very much still exist as IBI will remain in place for those under the age of 5. How can we rely on the notion that the new OAP will offer children the same intensive services, when it belongs to a separate stream that they do not qualify for?

With no insight into what the new OAP will offer, committee meeting updates lacking great detail and nobody answering questions, all we are left to know is that in a few short months, regardless of whether or not our children are currently receiving exactly what they need, it will all be replaced with something different, and it appears, something less. If children were going to receive exactly what they need, many of these children would not be ripped away from their current services, or continue to be denied access to services they have long awaited – due to their age.
You should understand that after the Government’s misinterpretation of the expert committee’s recommendations last year, there is very little trust left within the ASD community. Any apparent attempt to refuse the release of essential information is seen as an attempt to prevent parents from opposing it before it is implemented. What issues do you anticipate will arise if you inform parents in a direct, transparent manner on decisions regarding the development of the OAP?

We can not take a chance on our children’s best interests and sit back until June in hopes of a favorable outcome with the ever-growing list of red flags and uncertainties. It is time that the Ministry explain itself, and provide detailed information in regards to the services & intensity options that children over 5 will receive in the Ontario Autism Program. Will you be keeping your promises, Mr. Coteau? Or are you balancing the budget on our backs once again?